Re: Question about increase in autistic behaviors

[Guest guest]

Ellen

Interesting how you used the word cycle. It sounds a bit like the manic

phase of bipolar. I wish I had some great idea, I don't but I will send it to a

special ed teacher I know who has an ADHD bipolar son to see if she has any

ideas. In the meantime good luck to you and hubby. Nora

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[Guest guest]

Ellen you make a good point. It is harder as we age to handle this stuff. I

saw my Mom really burn out at the end. It is a huge issue for siblings as we

take over for parents. We are aging right along with our sibs. You are

right the fun never ends. Nora

In a message dated 10/27/2008 8:24:05 PM Central Daylight Time,

egskb@... writes:

Thanks, Nora.

I always figured the smearing poop phase was the worst and we could weather

almost anything else...I forgot that we would be getting older and maybe a

little less tolerant

As I always like to say...the fun never ends, but the rules of the game keep

changing!

Ellen

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[Guest guest]

Ellen

I too just used the word 'cycle' at Shane's psyciatrist appt today. 1 month

ago we had nothing to report and today I'm saying he is back to not

sleeping, flapping more and seeking out more ways to do it, his OCD seems to

have

kicked in and his ability to cope as well. Someone said fall can be a bad

time,

why do you think that is? Our Dr uses Seroquel to help him sleep and

control some other symptoms, we upped it today.

**************Play online games for FREE at Games.com! All of your favorites,

no registration required and great graphics – check it out!

(http://pr.atwola.com/promoclk/100000075x1211202682x1200689022/aol?redir=

http://www.games.com?ncid=emlcntusgame00000001)

[Guest guest]

I hear ya about the keeping a journal. I guess it wouldn't bother me so

much about meds working for a time and then not if it didn't bother my son.

Now

that he is getting older and identifying some of his symptoms it bothers him

when he doesn't 'feel right'. He has his way of coping which usually is

withdrawal unto himself but if that works for him than I let him go with it for

awhile.

**************Play online games for FREE at Games.com! All of your favorites,

no registration required and great graphics – check it out!

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[Guest guest]

Thanks, Nora.

I always figured the smearing poop phase was the worst and we could weather

almost anything else...I forgot that we would be getting older and maybe a

little less tolerant

As I always like to say...the fun never ends, but the rules of the game keep

changing!

Ellen

Ellen Garber Bronfeld

egskb@...

Re: Question about increase in " autistic " behaviors

Ellen

Interesting how you used the word cycle. It sounds a bit like the manic

phase of bipolar. I wish I had some great idea, I don't but I will send it to

a

special ed teacher I know who has an ADHD bipolar son to see if she has any

ideas. In the meantime good luck to you and hubby. Nora

**************Play online games for FREE at Games.com! All of your favorites,

no registration required and great graphics – check it out!

(http://pr.atwola.com/promoclk/100000075x1211202682x1200689022/aol?redir=

http://www.games.com?ncid=emlcntusgame00000001)

[Guest guest]

Noah has been on just about every med there is...seroquel was one of them...I

should have kept a journal...I can't remember which ones worked for a while and

then didn't, and which ones didn't work at all, and which ones made him more

hyper...

You could probably name a dozen meds and Noah would have taken at least half of

them...maybe more...

Apparently the " cycling " is quite common with ASD and it is, I suspect, similar

in some ways to the cycling one sees in bipolar disorder.

Ellen

Ellen Garber Bronfeld

egskb@...

Re: Question about increase in " autistic " behaviors

Ellen

I too just used the word 'cycle' at Shane's psyciatrist appt today. 1 month

ago we had nothing to report and today I'm saying he is back to not

sleeping, flapping more and seeking out more ways to do it, his OCD seems to

have

kicked in and his ability to cope as well. Someone said fall can be a bad

time,

why do you think that is? Our Dr uses Seroquel to help him sleep and

control some other symptoms, we upped it today.

**************Play online games for FREE at Games.com! All of your favorites,

no registration required and great graphics – check it out!

(http://pr.atwola.com/promoclk/100000075x1211202682x1200689022/aol?redir=

http://www.games.com?ncid=emlcntusgame00000001)

[Guest guest]

I can only imagine how some of those meds must make our children feel...without

much language it is impossible to know until we see it in behaviors...

Ellen

Ellen Garber Bronfeld

egskb@...

Re: Question about increase in " autistic " behaviors

I hear ya about the keeping a journal. I guess it wouldn't bother me so

much about meds working for a time and then not if it didn't bother my son.

Now

that he is getting older and identifying some of his symptoms it bothers him

when he doesn't 'feel right'. He has his way of coping which usually is

withdrawal unto himself but if that works for him than I let him go with it

for

awhile.

**************Play online games for FREE at Games.com! All of your favorites,

no registration required and great graphics – check it out!

(http://pr.atwola.com/promoclk/100000075x1211202682x1200689022/aol?redir=

http://www.games.com?ncid=emlcntusgame00000001)

[Guest guest]

Hello All,

I have seen this type of behavior. It is kind of a cycle. You have a period of

time that things are going well, then school starts and then ...who is this

child? It is almost like someone took my kid and replaced him. We are going

through similar situation now and it is soooooo hard! School started and within

2 weeks,.....it seems like 3 years of progress is GONE! After many hours of

worrying, getting him in to see a neurologist and calling his doctors and social

workers like 1000 times. We hopefully are heading towards the right direction. I

must say that the school's IEP team was terrific! The best decision was going

back to school and going for my Masters in Special Education. I am completing my

student teaching in 6 weeks, then there will be a new dedicated teacher. I want

to give back to the community. I am especially concerned about my future

students!

Just wanted to share!

Re: Question about increase in " autistic " behaviors

Ellen

I too just used the word 'cycle' at Shane's psyciatrist appt today. 1 month

ago we had nothing to report and today I'm saying he is back to not

sleeping, flapping more and seeking out more ways to do it, his OCD seems to

have

kicked in and his ability to cope as well. Someone said fall can be a bad time,

why do you think that is? Our Dr uses Seroquel to help him sleep and

control some other symptoms, we upped it today.

**************Play online games for FREE at Games.com! All of your favorites,

no registration required and great graphics – check it out!

(http://pr.atwola.com/promoclk/100000075x1211202682x1200689022/aol?redir=

http://www.games.com?ncid=emlcntusgame00000001)

[Guest guest]

Hi Ellen,

I notice an increase in Angel's autistic behaviors  during a certain time of the

month, when she is constipated (she gets that a lot), when she isn't feeling

well, or there has been a major change in her routine.

Angel's daddy doesn't have to 'tolerance' for Angel's noises like I do (I'm an

'expert' at tuning out people).

I wouldn't wean him off any medication without the doctor's approval.

Ange; has been taking Melatonin and sleeps very well.

Finato

www.AngelSpeaks.com

www.wegrowdreams.org

From: ellenbronfeld <egskb@...>

Subject: Question about increase in " autistic " behaviors

IPADDUnite

Date: Monday, October 27, 2008, 2:14 PM

Hi all:

Just wondering what others do when an individual with autism gets

real noisy and " hyper " ?

Noah is not among the great sleepers, but over the past half dozen

years or so, his behavior has been pretty calm and relatively

controlled, in spite of sleep issues...The past several weeks there

has been a pretty dramatic change; very noisy, flapping,

jumping...basically a resurgence of " old " behaviors... He is still

sweet, often smiley and cooperative. He does tend to " cycle up " more

in the fall and spring. He says he feels ok but cannot control the

noise. My husband is going CRAZY!!! He is really affected by the

constant (and I mean CONSTANT) noise. I am pretty tolerant but after

a few hours of hearing his high pitched humming and other variety of

sounds, I am ready to start using ear plugs. As a migraine sufferer,

this is particularly difficult for me when I have a migraine, as you

can imagine.

Noah is currently on 10 mg of Lexapro once a day and 7.5 mg of Buspar

twice a day and 1 mg of Klonipin in the evening before bed. I am

considering weaning him off the Lexapro...not that I think it is

causing a problem but, I don't think it is helping...

I have an appointment with the internist to check him out...there is

no evidence of an illness, but I want to make sure his throat and

ears are ok...maybe run some blood work...I am a nurse and in my

opinion, he is not ill...He says he feels ok and that nothing hurts.

He is eating and drinking...all other bodily functions seem ok...

I have a call in to the psychiatrist. ..

Any thoughts out there???

Ellen

[Guest guest]

Thanks, .

We have tried melatonin with no effect...bummer...Noah doesn't appear to have

any extenuating physical problems...but I will be checking that out, just to be

on the safe side.

And yes...we mom's have a special ability to tune out...I don't know many dad's

who can do that...but if there is one (or more) out there who can do

that...let's me know that I am wrong in overgeneralizing...

Ellen

Ellen Garber Bronfeld

egskb@...

Question about increase in " autistic " behaviors

IPADDUnite

Date: Monday, October 27, 2008, 2:14 PM

Hi all:

Just wondering what others do when an individual with autism gets

real noisy and " hyper " ?

Noah is not among the great sleepers, but over the past half dozen

years or so, his behavior has been pretty calm and relatively

controlled, in spite of sleep issues...The past several weeks there

has been a pretty dramatic change; very noisy, flapping,

jumping...basically a resurgence of " old " behaviors... He is still

sweet, often smiley and cooperative. He does tend to " cycle up " more

in the fall and spring. He says he feels ok but cannot control the

noise. My husband is going CRAZY!!! He is really affected by the

constant (and I mean CONSTANT) noise. I am pretty tolerant but after

a few hours of hearing his high pitched humming and other variety of

sounds, I am ready to start using ear plugs. As a migraine sufferer,

this is particularly difficult for me when I have a migraine, as you

can imagine.

Noah is currently on 10 mg of Lexapro once a day and 7.5 mg of Buspar

twice a day and 1 mg of Klonipin in the evening before bed. I am

considering weaning him off the Lexapro...not that I think it is

causing a problem but, I don't think it is helping...

I have an appointment with the internist to check him out...there is

no evidence of an illness, but I want to make sure his throat and

ears are ok...maybe run some blood work...I am a nurse and in my

opinion, he is not ill...He says he feels ok and that nothing hurts.

He is eating and drinking...all other bodily functions seem ok...

I have a call in to the psychiatrist. ..

Any thoughts out there???

Ellen

[Guest guest]

Thanks for sharing! Great to know we have another fabulous teacher out there!!!

Ellen

Ellen Garber Bronfeld

egskb@...

Re: Question about increase in " autistic " behaviors

Ellen

I too just used the word 'cycle' at Shane's psyciatrist appt today. 1 month

ago we had nothing to report and today I'm saying he is back to not

sleeping, flapping more and seeking out more ways to do it, his OCD seems to

have

kicked in and his ability to cope as well. Someone said fall can be a bad

time,

why do you think that is? Our Dr uses Seroquel to help him sleep and

control some other symptoms, we upped it today.

**************Play online games for FREE at Games.com! All of your favorites,

no registration required and great graphics – check it out!

(http://pr.atwola.com/promoclk/100000075x1211202682x1200689022/aol?redir=

http://www.games.com?ncid=emlcntusgame00000001)

[Guest guest]

Nonsense,Ellen, the dads can all tune it out.

They just need pharmacological assistance...

Jean

On Mon, Oct 27, 2008 at 10:25 PM, ELLEN BRONFELD <egskb@...>wrote:

> Thanks for sharing! Great to know we have another fabulous teacher out

> there!!!

>

> Ellen

> Ellen Garber Bronfeld

> egskb@... <egskb%40sbcglobal.net>

> Re: Question about increase in " autistic " behaviors

>

> Ellen

> I too just used the word 'cycle' at Shane's psyciatrist appt today. 1 month

>

> ago we had nothing to report and today I'm saying he is back to not

> sleeping, flapping more and seeking out more ways to do it, his OCD seems

> to have

> kicked in and his ability to cope as well. Someone said fall can be a bad

> time,

> why do you think that is? Our Dr uses Seroquel to help him sleep and

> control some other symptoms, we upped it today.

>

>

>

> **************Play online games for FREE at Games.com! All of your

> favorites,

> no registration required and great graphics – check it out!

> (http://pr.atwola.com/promoclk/100000075x1211202682x1200689022/aol?redir=

> http://www.games.com?ncid=emlcntusgame00000001)

>

>

[Guest guest]

Ellen,

I love the journal idea. I wish I would have done that. Have a lot of

that thinking now as I'm getting " more mature " .

My hubby & I are just the opposite. He can tune out better than

I can, but then I do more things with him.

He had an increase of " self-abusive behaviors " recently....(like

shortly after he moved into the group home)....hmmmm. They got more

pronunced a couple weeks ago & about a month after he had been put on

Revia. I called the Dr.s office & made them d/c it. Then I called

the group home & told them. He hasn't had an incident report that I'm

aware of since he's been off it. Which has only been 2 weeks.

Today I'm going in to look at his records.

Liz

[Guest guest]

Funny, Jean! I am always telling my hubby he could use one of those

" mother's little helpers " that Mick Jagger sang about in the late 60's

Ellen

Ellen Garber Bronfeld

egskb@...

Re: Question about increase in " autistic " behaviors

>

> Ellen

> I too just used the word 'cycle' at Shane's psyciatrist appt today. 1

> month

>

> ago we had nothing to report and today I'm saying he is back to not

> sleeping, flapping more and seeking out more ways to do it, his OCD seems

> to have

> kicked in and his ability to cope as well. Someone said fall can be a bad

> time,

> why do you think that is? Our Dr uses Seroquel to help him sleep and

> control some other symptoms, we upped it today.

>

>

>

> **************Play online games for FREE at Games.com! All of your

> favorites,

> no registration required and great graphics – check it out!

> (http://pr.atwola.com/promoclk/100000075x1211202682x1200689022/aol?redir=

> http://www.games.com?ncid=emlcntusgame00000001)

>

>

[Guest guest]

Hi Ellen --

I didn't catch how old your son is...mine will be 12 next week and

I've noticed that his anxiety ramps up in the fall, levels off or

drops in the winter and then ramps up again near the end of the

school year (April-ish). We had a period where we had it all under

control with our " cocktail " of meds for about 7 - 9 months and then

he hit a growth spurt and it all fell apart. We just switched him to

Abilify and are in the process of increasing that to see if it helps

stabilize his mood a little more. He's also on prozac and a just a

dash of Strattera. One thing we are working on is keeping his falls

and springs as consistent as possible to ease any transitions he may

have. Social stories addressing the anxieties we think he may be

going through have been very helpful, too. He doesn't need them for

long, but the first half dozen times reading it have been

instrumental in bringing that particular anxiety to a coping level.

We are also trying to find more ways for him to " blow off steam "

during this time, too. I compare him to a pressure cooker...by the

time he gets home, he's ready to blow sometimes! So we are working

on getting more breaks (and effective ones at that) during the course

of the day during this time of year and again in April-ish. It is

just so hard to keep up with...just when you think you get it figured

out, you get thrown another curve ball...I HATE that.

Take care,

Holly

>

> Hi all:

> Just wondering what others do when an individual with autism gets

> real noisy and " hyper " ?

> Noah is not among the great sleepers, but over the past half dozen

> years or so, his behavior has been pretty calm and relatively

> controlled, in spite of sleep issues...The past several weeks there

> has been a pretty dramatic change; very noisy, flapping,

> jumping...basically a resurgence of " old " behaviors...He is still

> sweet, often smiley and cooperative. He does tend to " cycle up "

more

> in the fall and spring. He says he feels ok but cannot control the

> noise. My husband is going CRAZY!!! He is really affected by the

> constant (and I mean CONSTANT) noise. I am pretty tolerant but

after

> a few hours of hearing his high pitched humming and other variety

of

> sounds, I am ready to start using ear plugs. As a migraine

sufferer,

> this is particularly difficult for me when I have a migraine, as

you

> can imagine.

> Noah is currently on 10 mg of Lexapro once a day and 7.5 mg of

Buspar

> twice a day and 1 mg of Klonipin in the evening before bed. I am

> considering weaning him off the Lexapro...not that I think it is

> causing a problem but, I don't think it is helping...

> I have an appointment with the internist to check him out...there

is

> no evidence of an illness, but I want to make sure his throat and

> ears are ok...maybe run some blood work...I am a nurse and in my

> opinion, he is not ill...He says he feels ok and that nothing

hurts.

> He is eating and drinking...all other bodily functions seem ok...

> I have a call in to the psychiatrist...

> Any thoughts out there???

> Ellen

>

[Guest guest]

A lot of parents on my other groups swear fall and spring are the worst and most

think it's allergy related.  I think autistic kids are just hyper-sensitive to

so many environmental factors, it wouldn't surprise me if that is the reason.

H.

Re: Question about increase in " autistic " behaviors

Ellen

too just used the word 'cycle' at Shane's psyciatrist appt today. 1 month

go we had nothing to report and today I'm saying he is back to not

leeping, flapping more and seeking out more ways to do it, his OCD seems to

ave

icked in and his ability to cope as well. Someone said fall can be a bad

ime,

hy do you think that is? Our Dr uses Seroquel to help him sleep and

ontrol some other symptoms, we upped it today.

hristine

*************Play online games for FREE at Games.com! All of your favorites,

o registration required and great graphics – check it out!

http://pr.atwola.com/promoclk/100000075x1211202682x1200689022/aol?redir=

ttp://www.games.com?ncid=emlcntusgame00000001)

Non-text portions of this message have been removed]

-----------------------------------

[Guest guest]

Ellen,

You have asked the million dollar question, that although I do

not have the answer, my , does the same noises, literally all day

also. Not high pitched but grunting and " ha " and " ohhh " in a deep

voice. My husband is also extremely bothered by it, and now my

daughter who is very tolerant, is going nuts too. I'm okay with it,

school is very okay with it. is cooperative, sweet and

productive as well, but the noises are a problem, because I fear it

will hurt his abilities to work in the outside world. It just plain

is not appropriate in a work setting. It has been going on now for

about 1 year, he is almost 16 now. He is on clonazepam and Abilify,

neither of which help it much.

So anyone out there, help our families! To me it's not really that

bad, but the world at large unfortunately will not tolerate it.

Diane S

>

> Hi all:

> Just wondering what others do when an individual with autism gets

> real noisy and " hyper " ?

> Noah is not among the great sleepers, but over the past half dozen

> years or so, his behavior has been pretty calm and relatively

> controlled, in spite of sleep issues...The past several weeks there

> has been a pretty dramatic change; very noisy, flapping,

> jumping...basically a resurgence of " old " behaviors...He is still

> sweet, often smiley and cooperative. He does tend to " cycle up "

more

> in the fall and spring. He says he feels ok but cannot control the

> noise. My husband is going CRAZY!!! He is really affected by the

> constant (and I mean CONSTANT) noise. I am pretty tolerant but

after

> a few hours of hearing his high pitched humming and other variety

of

> sounds, I am ready to start using ear plugs. As a migraine

sufferer,

> this is particularly difficult for me when I have a migraine, as

you

> can imagine.

> Noah is currently on 10 mg of Lexapro once a day and 7.5 mg of

Buspar

> twice a day and 1 mg of Klonipin in the evening before bed. I am

> considering weaning him off the Lexapro...not that I think it is

> causing a problem but, I don't think it is helping...

> I have an appointment with the internist to check him out...there

is

> no evidence of an illness, but I want to make sure his throat and

> ears are ok...maybe run some blood work...I am a nurse and in my

> opinion, he is not ill...He says he feels ok and that nothing

hurts.

> He is eating and drinking...all other bodily functions seem ok...

> I have a call in to the psychiatrist...

> Any thoughts out there???

> Ellen

>

[Guest guest]

Hi Diane,

We, too, have a 'loud' girl whose vocalizations have often been uncontrollable

and very inappropriate to many business settings. It's a constant struggle,

because like many young adults, she is capable of doing many productive

things...the trick is to find places where either her noises won't be so

disruptive as to get her 'fired', or to find work (mostly all volunteer so far)

where she can keep moving around (which reduces the noises for her) or where she

picks up the work, completes it off-site, then returns the finished product to

the worksite. Right now we're fortunate that our school district/transition has

a few options within some administrative buildings where can go to

complete work. What happens beyond transition, I'm not really sure.

I suspect that our kids' vocalizations will not only limit their abilities to

work in the 'community' at large, but will also limit/impair their ability to

live with others in a group home or apartment, or even to attend some of the day

programs! It stinks!! I, too, wish there was some ready solution but we're

still plugging along, trying to find work where we can so that she will have a

meaningful day beyond transition.

For her, the noise level goes noticeably UP when she is in less structured, more

down-time, situations. Which does not bode well for the average day program or

a 'stay-happily-at-home-with-mom' option. Yikes!

Which is why I stress to anyone who has younger children to focus on the

behaviors and communication aspects of their child -- because these are the

skills, or lack thereof, that seem to most limit 's options as she goes

forward. Her teachers tell me she can 'work circles around' most of the other

transition students; but it's her vocalizations/behaviors that prevent her from

getting or keeping many assignments in the community.

Let's keep this dialogue going. I'm investigating right now whether there would

be a market for a 'door-to-door shredding business' for businesses in strip

malls. could purchase a shredder and pull it around door-to-door on a

wheeled luggage carrier...'do you have any shredding today?' and then shred in

their backrooms. Gives her a purpose, helps some small businesses (maybe), and

she likes to pull heavy objects and watch the paper going thru the shredder

(great visual display).

We'll see. Her residential real estate 'stuffing and delivery' service is

something she also enjoys a lot (she's the one who stuffs marketing materials

into cello bags and then walks them door-to-door) was great but right now the

real estate business is NOT the place to be.

With any of these ideas, I'm trying to find jobs that would pay her some money

to offset the costs of paying for her support person (who drives her, supervises

for safety etc). Thinking that someday soon we'll find a friend who has similar

support needs/strengths who would be interested in doing it with her; then we'd

share cost of the support person.

Sorry if this is long, it's a subject that is near and dear to my heart.

Laurie

Re: Question about increase in " autistic " behaviors

Ellen,

You have asked the million dollar question, that although I do

not have the answer, my , does the same noises, literally all day

also. Not high pitched but grunting and " ha " and " ohhh " in a deep

voice. My husband is also extremely bothered by it, and now my

daughter who is very tolerant, is going nuts too. I'm okay with it,

school is very okay with it. is cooperative, sweet and

productive as well, but the noises are a problem, because I fear it

will hurt his abilities to work in the outside world. It just plain

is not appropriate in a work setting. It has been going on now for

about 1 year, he is almost 16 now. He is on clonazepam and Abilify,

neither of which help it much.

So anyone out there, help our families! To me it's not really that

bad, but the world at large unfortunately will not tolerate it.

Diane S

>

> Hi all:

> Just wondering what others do when an individual with autism gets

> real noisy and " hyper " ?

> Noah is not among the great sleepers, but over the past half dozen

> years or so, his behavior has been pretty calm and relatively

> controlled, in spite of sleep issues...The past several weeks there

> has been a pretty dramatic change; very noisy, flapping,

> jumping...basically a resurgence of " old " behaviors...He is still

> sweet, often smiley and cooperative. He does tend to " cycle up "

more

> in the fall and spring. He says he feels ok but cannot control the

> noise. My husband is going CRAZY!!! He is really affected by the

> constant (and I mean CONSTANT) noise. I am pretty tolerant but

after

> a few hours of hearing his high pitched humming and other variety

of

> sounds, I am ready to start using ear plugs. As a migraine

sufferer,

> this is particularly difficult for me when I have a migraine, as

you

> can imagine.

> Noah is currently on 10 mg of Lexapro once a day and 7.5 mg of

Buspar

> twice a day and 1 mg of Klonipin in the evening before bed. I am

> considering weaning him off the Lexapro...not that I think it is

> causing a problem but, I don't think it is helping...

> I have an appointment with the internist to check him out...there

is

> no evidence of an illness, but I want to make sure his throat and

> ears are ok...maybe run some blood work...I am a nurse and in my

> opinion, he is not ill...He says he feels ok and that nothing

hurts.

> He is eating and drinking...all other bodily functions seem ok...

> I have a call in to the psychiatrist...

> Any thoughts out there???

> Ellen

>

[Guest guest]

This has been a " loud " few days for as well (and with my

concert next week, I hope he quiets down soon LOL!). Russ doesn't

do well with the change of seasons and does have allergic rhinitis

which doen't help. We are now at the end of that season and he

should be better with a good, hard frost. Until that time, we do

what we can. He has his own business--envelope stuffing--and can

make all the noise he wants.

We had a major pipe burst in our basement a month ago and with the

professional cleaners ( the pipe carried all the junk from the

disposal--it STUNK) and plumbers and workmen to put back the drywall

and tile (mess, mess, mess), he has not been happy. Our basement is

partially finished and it was in the unfinished part (thank goodness)

but Russ still cannot go and watch his movies in the basement with

all the junk from the storage area sitting on the recliner and

daybed and the area around the TV. This does not please him. And

having workman around (and him being loud)is not easy for him. Or

me. We have the last part to do next week. I am hoping it makes a

difference whan he can go back to the rec room.

Anyway, we all do what we can and some days (and weeks and months)

are louder than others. BTW Chuck is the one that can take the

noise, I am the one ready to scream (and I am a soprano--hear me

roar, but HIGH!)most days!

Marie

> >

> > Hi all:

> > Just wondering what others do when an individual with autism

gets

> > real noisy and " hyper " ?

> > Noah is not among the great sleepers, but over the past half

dozen

> > years or so, his behavior has been pretty calm and relatively

> > controlled, in spite of sleep issues...The past several weeks

there

> > has been a pretty dramatic change; very noisy, flapping,

> > jumping...basically a resurgence of " old " behaviors...He is

still

> > sweet, often smiley and cooperative. He does tend to " cycle

up "

> more

> > in the fall and spring. He says he feels ok but cannot control

the

> > noise. My husband is going CRAZY!!! He is really affected by

the

> > constant (and I mean CONSTANT) noise. I am pretty tolerant but

> after

> > a few hours of hearing his high pitched humming and other

variety

> of

> > sounds, I am ready to start using ear plugs. As a migraine

> sufferer,

> > this is particularly difficult for me when I have a migraine,

as

> you

> > can imagine.

> > Noah is currently on 10 mg of Lexapro once a day and 7.5 mg of

> Buspar

> > twice a day and 1 mg of Klonipin in the evening before bed. I

am

> > considering weaning him off the Lexapro...not that I think it

is

> > causing a problem but, I don't think it is helping...

> > I have an appointment with the internist to check him

out...there

> is

> > no evidence of an illness, but I want to make sure his throat

and

> > ears are ok...maybe run some blood work...I am a nurse and in

my

> > opinion, he is not ill...He says he feels ok and that nothing

> hurts.

> > He is eating and drinking...all other bodily functions seem

ok...

> > I have a call in to the psychiatrist...

> > Any thoughts out there???

> > Ellen

> >

>

>

>

>

>

>

[Guest guest]

Hi Ellen,

I hope this is not the case for Noah, but we have noticed over the years that

Quentin's autistic

behavior's, (hand-flapping, vocalising, persevering) increase markedly prior to

seizures. This

observation has been confirmed by the staff that work with him so it is always

noted in our

communication journal and 95% of the time the next day he has seizures.

I have heard that some seizure activity is visible only by EEG, with our son it

is very clear.

About the medical journal, I started one with Quentin because our neurologist

kept changing

combinations and doses of meds trying to find the right cocktail to stop or at

least decrease

seizures. I have noticed that meds have different effects at different times in

his life. Some that were

effective when he was younger are no longer and I recently discovered (since

medicare will not cover

a name brand if a generic exists) that even that change had negative effects.

For the vocalising, I put his favorite music on and that seems to help.

Thais

--

WOW! Homepage (http://www.wowway.com)

[Guest guest]

Laurie, Angel is the same way.  The busier she is, the less vocal she is

(unless, she feels like being a little giggle puss).  I don't think day programs

have issues with this, at least the ones that I've toured.

Finato

www.AngelSpeaks.com

www.wegrowdreams.org

From: Jerue Family <jeruefamily@...>

Subject: Re: Re: Question about increase in " autistic " behaviors

IPADDUnite

Date: Tuesday, October 28, 2008, 8:15 AM

Hi Diane,

We, too, have a 'loud' girl whose vocalizations have often been uncontrollable

and very inappropriate to many business settings. It's a constant struggle,

because like many young adults, she is capable of doing many productive

things...the trick is to find places where either her noises won't be so

disruptive as to get her 'fired', or to find work (mostly all volunteer so far)

where she can keep moving around (which reduces the noises for her) or where she

picks up the work, completes it off-site, then returns the finished product to

the worksite. Right now we're fortunate that our school district/transition has

a few options within some administrative buildings where can go to

complete work. What happens beyond transition, I'm not really sure.

I suspect that our kids' vocalizations will not only limit their abilities to

work in the 'community' at large, but will also limit/impair their ability to

live with others in a group home or apartment, or even to attend some of the day

programs! It stinks!! I, too, wish there was some ready solution but we're

still plugging along, trying to find work where we can so that she will have a

meaningful day beyond transition.

For her, the noise level goes noticeably UP when she is in less structured, more

down-time, situations. Which does not bode well for the average day program or

a 'stay-happily- at-home-with- mom' option. Yikes!

Which is why I stress to anyone who has younger children to focus on the

behaviors and communication aspects of their child -- because these are the

skills, or lack thereof, that seem to most limit 's options as she goes

forward. Her teachers tell me she can 'work circles around' most of the other

transition students; but it's her vocalizations/ behaviors that prevent her from

getting or keeping many assignments in the community.

Let's keep this dialogue going. I'm investigating right now whether there would

be a market for a 'door-to-door shredding business' for businesses in strip

malls. could purchase a shredder and pull it around door-to-door on a

wheeled luggage carrier...'do you have any shredding today?' and then shred in

their backrooms. Gives her a purpose, helps some small businesses (maybe), and

she likes to pull heavy objects and watch the paper going thru the shredder

(great visual display).

We'll see. Her residential real estate 'stuffing and delivery' service is

something she also enjoys a lot (she's the one who stuffs marketing materials

into cello bags and then walks them door-to-door) was great but right now the

real estate business is NOT the place to be.

With any of these ideas, I'm trying to find jobs that would pay her some money

to offset the costs of paying for her support person (who drives her, supervises

for safety etc). Thinking that someday soon we'll find a friend who has similar

support needs/strengths who would be interested in doing it with her; then we'd

share cost of the support person.

Sorry if this is long, it's a subject that is near and dear to my heart.

Laurie

Re: Question about increase in " autistic " behaviors

Ellen,

You have asked the million dollar question, that although I do

not have the answer, my , does the same noises, literally all day

also. Not high pitched but grunting and " ha " and " ohhh " in a deep

voice. My husband is also extremely bothered by it, and now my

daughter who is very tolerant, is going nuts too. I'm okay with it,

school is very okay with it. is cooperative, sweet and

productive as well, but the noises are a problem, because I fear it

will hurt his abilities to work in the outside world. It just plain

is not appropriate in a work setting. It has been going on now for

about 1 year, he is almost 16 now. He is on clonazepam and Abilify,

neither of which help it much.

So anyone out there, help our families! To me it's not really that

bad, but the world at large unfortunately will not tolerate it.

Diane S

>

> Hi all:

> Just wondering what others do when an individual with autism gets

> real noisy and " hyper " ?

> Noah is not among the great sleepers, but over the past half dozen

> years or so, his behavior has been pretty calm and relatively

> controlled, in spite of sleep issues...The past several weeks there

> has been a pretty dramatic change; very noisy, flapping,

> jumping...basically a resurgence of " old " behaviors... He is still

> sweet, often smiley and cooperative. He does tend to " cycle up "

more

> in the fall and spring. He says he feels ok but cannot control the

> noise. My husband is going CRAZY!!! He is really affected by the

> constant (and I mean CONSTANT) noise. I am pretty tolerant but

after

> a few hours of hearing his high pitched humming and other variety

of

> sounds, I am ready to start using ear plugs. As a migraine

sufferer,

> this is particularly difficult for me when I have a migraine, as

you

> can imagine.

> Noah is currently on 10 mg of Lexapro once a day and 7.5 mg of

Buspar

> twice a day and 1 mg of Klonipin in the evening before bed. I am

> considering weaning him off the Lexapro...not that I think it is

> causing a problem but, I don't think it is helping...

> I have an appointment with the internist to check him out...there

is

> no evidence of an illness, but I want to make sure his throat and

> ears are ok...maybe run some blood work...I am a nurse and in my

> opinion, he is not ill...He says he feels ok and that nothing

hurts.

> He is eating and drinking...all other bodily functions seem ok...

> I have a call in to the psychiatrist. ..

> Any thoughts out there???

> Ellen

>

[Guest guest]

My greatest fear is what happens when Noah is in residential and I am not there

daily to make sure he is ok...

The fact that they can put our children on meds without our approval is

appalling! Glad you could easily get him off the medication.

Ellen

Ellen Garber Bronfeld

egskb@...

Re: Question about increase in " autistic " behaviors

Ellen,

I love the journal idea. I wish I would have done that. Have a lot of

that thinking now as I'm getting " more mature " .

My hubby & I are just the opposite. He can tune out better than

I can, but then I do more things with him.

He had an increase of " self-abusive behaviors " recently....(like

shortly after he moved into the group home)....hmmmm. They got more

pronunced a couple weeks ago & about a month after he had been put on

Revia. I called the Dr.s office & made them d/c it. Then I called

the group home & told them. He hasn't had an incident report that I'm

aware of since he's been off it. Which has only been 2 weeks.

Today I'm going in to look at his records.

Liz

[Guest guest]

Hi Holly:

You are describing my experience with Noah to a " T " ! Noah is now 22, but at 12

that was exactly our experience. At 22, Noah is more even and better able to

control his behaviors...but still...occasionally, as we are seeing right now,

the cycles ramp up...Noah was on those med cocktails for so long...during one of

his long stretches of calm, I slowly weaned him off most of his meds...I will

not be too keen on adding anything much now...if anything I would love to

discontinue the lexapro, as I do not think it is that useful...I would LOVE a

good sleep med...nothing has worked for any length of time...

Thanks for sharing...if your son is anything like Noah, I can tell you that the

seasonal mood shifts don't go away entirely, but they do get somewhat better AND

Noah has gotten so much for connected and able to communicate his needs...more

words, better articulation...still relatively non-verbal, but what he can say,

he is saying better...

He is actually a wonderful, delightful young man, much of the time...

Ellen

Ellen Garber Bronfeld

egskb@...

Re: Question about increase in " autistic " behaviors

Hi Ellen --

I didn't catch how old your son is...mine will be 12 next week and

I've noticed that his anxiety ramps up in the fall, levels off or

drops in the winter and then ramps up again near the end of the

school year (April-ish). We had a period where we had it all under

control with our " cocktail " of meds for about 7 - 9 months and then

he hit a growth spurt and it all fell apart. We just switched him to

Abilify and are in the process of increasing that to see if it helps

stabilize his mood a little more. He's also on prozac and a just a

dash of Strattera. One thing we are working on is keeping his falls

and springs as consistent as possible to ease any transitions he may

have. Social stories addressing the anxieties we think he may be

going through have been very helpful, too. He doesn't need them for

long, but the first half dozen times reading it have been

instrumental in bringing that particular anxiety to a coping level.

We are also trying to find more ways for him to " blow off steam "

during this time, too. I compare him to a pressure cooker...by the

time he gets home, he's ready to blow sometimes! So we are working

on getting more breaks (and effective ones at that) during the course

of the day during this time of year and again in April-ish. It is

just so hard to keep up with...just when you think you get it figured

out, you get thrown another curve ball...I HATE that.

Take care,

Holly

>

> Hi all:

> Just wondering what others do when an individual with autism gets

> real noisy and " hyper " ?

> Noah is not among the great sleepers, but over the past half dozen

> years or so, his behavior has been pretty calm and relatively

> controlled, in spite of sleep issues...The past several weeks there

> has been a pretty dramatic change; very noisy, flapping,

> jumping...basically a resurgence of " old " behaviors...He is still

> sweet, often smiley and cooperative. He does tend to " cycle up "

more

> in the fall and spring. He says he feels ok but cannot control the

> noise. My husband is going CRAZY!!! He is really affected by the

> constant (and I mean CONSTANT) noise. I am pretty tolerant but

after

> a few hours of hearing his high pitched humming and other variety

of

> sounds, I am ready to start using ear plugs. As a migraine

sufferer,

> this is particularly difficult for me when I have a migraine, as

you

> can imagine.

> Noah is currently on 10 mg of Lexapro once a day and 7.5 mg of

Buspar

> twice a day and 1 mg of Klonipin in the evening before bed. I am

> considering weaning him off the Lexapro...not that I think it is

> causing a problem but, I don't think it is helping...

> I have an appointment with the internist to check him out...there

is

> no evidence of an illness, but I want to make sure his throat and

> ears are ok...maybe run some blood work...I am a nurse and in my

> opinion, he is not ill...He says he feels ok and that nothing

hurts.

> He is eating and drinking...all other bodily functions seem ok...

> I have a call in to the psychiatrist...

> Any thoughts out there???

> Ellen

>

[Guest guest]

That is one thing I have considered, , since I have allergies. I tried

about a week's worth of an OTC 10mg decongestant...no change occurred. I will

be discussing with the internist the possibility of putting him on Claritin

short term to see if that makes a difference...

Ellen

Ellen Garber Bronfeld

egskb@...

Re: Question about increase in " autistic " behaviors

Ellen

too just used the word 'cycle' at Shane's psyciatrist appt today. 1 month

go we had nothing to report and today I'm saying he is back to not

leeping, flapping more and seeking out more ways to do it, his OCD seems to

ave

icked in and his ability to cope as well. Someone said fall can be a bad

ime,

hy do you think that is? Our Dr uses Seroquel to help him sleep and

ontrol some other symptoms, we upped it today.

hristine

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-----------------------------------

[Guest guest]

Thanks, Thais.

I have been considering having him use his Ipod more, but I hate to take him out

of the social milieu...it seems isolating to some degree, but it depends on how

long this lasts and how crazed hubby gets!

As for seizures, it is one of those things I have often thought about, feared

and looked for...but so far, I am not seeing any evidence, so, if he is

experiencing seizures, they would be only those noted on EEG...no evidence of

absence seizures, petit mal...I am with him a great deal and I am pretty sure I

would recognize one of I saw one...

I do think journaling is a good thing to do with our children...just sorry I

didn't do it!!!

Ellen

Ellen Garber Bronfeld

egskb@...

Re: Question about increase in " autistic " behaviors

Hi Ellen,

I hope this is not the case for Noah, but we have noticed over the years that

Quentin's autistic

behavior's, (hand-flapping, vocalising, persevering) increase markedly prior

to seizures. This

observation has been confirmed by the staff that work with him so it is always

noted in our

communication journal and 95% of the time the next day he has seizures.

I have heard that some seizure activity is visible only by EEG, with our son

it is very clear.

About the medical journal, I started one with Quentin because our neurologist

kept changing

combinations and doses of meds trying to find the right cocktail to stop or at

least decrease

seizures. I have noticed that meds have different effects at different times

in his life. Some that were

effective when he was younger are no longer and I recently discovered (since

medicare will not cover

a name brand if a generic exists) that even that change had negative effects.

For the vocalising, I put his favorite music on and that seems to help.

Thais

--

WOW! Homepage (http://www.wowway.com)